Riding the Waves of Being an Autism Mom

The other day I had the pleasure to sit down with my childhood bestie and talk Autism. 

I never would have dreamed that being Autism moms would be a common thread between us, but there we sat, spilling our fears, dreams, hopes, and realities of the every day.

She's started down the Autism path more recently than I.  It was when I was sitting with her and I heard myself talking that I realized I've been on this journey with an autism diagnosis for the past four years.

Four years.

In some aspects it seems like it's been much, much longer and in some aspects it seems like it's been a lot less time.

I mean, shouldn't I have this stuff down by pat by now? But I digress..

One of the things she asked me was about being a mom of an autistic child she said something like "do you find that some days you think it's not so bad, and other days you're crying and it's horrible. Some days I don't want to believe this is happening and other days it all seems doable and totally okay?"

Um, yes I totally feel that.  All of that.  And in that moment I can see a beach-like scene of all of us Autism moms.  Some are just getting to the water, others are way, way ahead.  And we're all wondering if the others are feeling the same things, going through the same things, fearing the same things, celebrating the same things.

And the answer is yes.  No matter where you are on the path into the water, we're all getting hit with the same waves. 

I associate these emotions and good days and bad days as waves.  Allow me to explain:

When I first became an autism mom I couldn't believe this was happening.  Everything seemed like it was turned upside down: the cleanliness of our house, the amount of doctor's appointments you find yourself going to, the behaviors, the medicines, the fact that everything is different. At first this is the toughest.  It's the first wave you get.  I liken it to just getting your feet wet and getting used to those first waves that are coming onto the shore. It's cold and you're thinking of just going back to the shore where it's dry and warm but you keep going because your feet are already wet and sandy.

At first they seem really brutal but you keep walking further into the water. And you find what was at your feet is small compared to what's now hitting you on your shins and knees.  This is when you've been with a diagnosis for a year or more. You are starting to get used to the idea of having an autistic child.  You try to own it with a sense of pride with license plates, awareness walks, books, and jewelry. Most days you can stand that you have an autistic child now but every once in a while like a pebble rolls over your foot, your remember that under current along your feet, and again you are sobbing that your child has to have autism.  The waves that feel really bad though now are the ones that contain things like self doubt: wondering how you may have caused your child to have autism, guilt: feeling bad about having not being so in love with idea of having a kid with autism.  Other emotions in this level of waves include your patience wearing thin, the reality that insurance is horrible on every level of trying to help a child with autism, and just how utterly exhausting caring for a child with special needs truly is. 

And you feel like you are going to get swept under the water with these waves but you really want to jump the waves so you keep walking into the water. The waves that hit you at your waist are easier to deal with because you dealt with the first two stages so you kind of knew what to expect.  Depression, guilt, denying your child has autism, accepting your child has autism, happiness with progress, frustration at sadness, you can feel it all ebb and flow along the surface and you also know what's going on below.  Some days the waves are calm and days are great, and you have barely any trouble.  Other days the waves are huge and gruesome: trying to wash you away with drowning strength, they can carry you under in a depression that is often a month long struggle.

But still you fight, you want to live, and eventually you come to the surface.  And again you find yourself with these waves that are always present, always multi-leveled actions and movements with no telling which one will affect you the most. 

Today I left an appointment with the Developmental Pediatrician.  We were talking about other diagnosis on top of Autism and Apraxia and ADD.  But I was able to hold my head high.  I felt like I was just dealing with gentle lapping waves that are up to my chin and remind me how close I am to going under but the gentle movement makes me feel calm and secure.  Perhaps tomorrow they'll swallow me whole and I'll drown in sorrow and resentment for a while.

But for now I'm in the water, I'm swimming my swim and I'm okay.  That's my victory for today.

So for those of you who are just starting on the path into the water, just keep walking into the waves.  It's going to be okay. I promise.  I'm out in the shark infested waters inviting you to jump the waves with me. We'll hold hands and laugh together through this journey...scary waves and all. 

The "Fun" of Christmas with Autism

This isn't one of those posts where I'm all like "Christmas with an Autistic Child is like a dream come true..." because it just stinks.

The case of the stinks starts pretty much right after Thanksgiving. Or rather on Thanksgiving.

Christmas tree getting leads to over load.  Decorating leads to overload.  Cookies lead to overload.  Church performances lead to overload.  Shopping leads to overload.  Everything leads to overload.

And a lot of times people don't see it unless you are in the house with an Autistic child.  THEN I'm sure you see it. 

Our son, Calvin, will fall asleep when he's overloaded.  People say "oh, the poor thing's had a busy day." 

Nope, he just can't take anyone or anything, anymore.

Which is a great coping mechanism until it's 2 am and he's raring to go while punching me in the face to watch this one commercial with him.  Over and over and over and over.

Oh the Christmas joy.

Then there are the times when he doesn't even try to hide his overloaded-ness from anyone.

Take last Sunday in church for example...

Our cute, adorable Emma (who I always seems to describe like Grover) sang in church with some other girls. Nick pulls out his phone to video tape it. 

So here is the next 2 minutes of Calvin, full volume, in church with a somewhat Veruca Salt tone in his voice:

"I knew you had your phone. 

Why can't I play games on your phone?

No cell phones in church!

No cell phones in church!

Let me play games on your phone!

Why not?

No cell phones in church!

No cell phones in church!

You never let me play games in church!"

Oh.sweet.baby.Jesus.

If you seeing me saying this to my son it's not because I don't love him but rather because I am tired of whisper arguing in church after 3 sleepless nights.

Anyway, this is one of those Autism Mom Public Service Announcements to say, if you know someone who has an Autistic child, please cut them a little slack.  We all have a lot on our plates this time of year but for those of us with a child from Autism it takes everything to a completely whole new level. 

Just imagine we're trying to pacify one child so they won't completely fly off the handle at an event or at home and we are trying to make sure the children who don't have autism aren't feeling like the autistic child is spoiled and everything is focused on them and we are trying to plan for every little thing...is aunt so and so wears her strong perfume and they are going to complain loudly about how bad she smells what are you going to do? Or if that dog that they hate is there what are you going to do? Or if other kids want a turn with the toys at Grandma's and they don't' understand, what are you going to to?  We have 18 backup plans with 2 more to have as backup plans to our backup plans.  All that coupled with remembering green bean casserole and wrapping gifts and everything can just feel chaotic and overwhelming.

So if you know a Momma (or a Daddy!) who's little one has Autism, a hug and a starbucks giftcard can go a long way towards making us feel like we're not in this alone.  That you get it.  That you're here for us. 

And if you are celebrating Christmas with a little one on the spectrum please don't be freaked out.  Be understanding but don't treat them with kid gloves.  They will be able to sense it and that alone will feel weird and foreign.  Just be you to them and loving and understanding if they need to back away.  Look for those signs.  The child isn't trying to be defiant or naughty by not wanting to participate or do something but rather that may be their way of shutting down as a coping mechanism to try to avoid overload. We sure love our little ones don't we?  Christmas is so special for them and even if they aren't participating or are struggling, they're still here doing it with us.  They know everything around them and they get it on a deep level, trust me. 

All that being said...

Merry Christmas!  I have a feeling it will definitely not be a Silent Night.

Christmas Tree 2015

Last year we had a great time getting our Christmas tree.  You can read all about it here. 

Our old c7 bulbs died and we had to buy new LED bulbs.  Don't get me wrong, I love them and they're pretty but they just aren't the same.  Here's our picture of the tree last year. 

I had the hardest time trying to explain this to people but while the lights were almost annoyingly bright the tree was dark. Do ya know what I mean?

 So this year this is our tree.  

It pretty much looks the same except this year it's a little glowier.  What's my trick?  Those cheap white twinkle lights.  We took 2 strands of white twinkly lights (100 bulbs per strand) and wrapped them around the trunk of the tree.  Our tree is 9 feet tall and the 2 strands worked great.  So we kept those strictly on the inside of the tree and then on the outside we put our fancy dancy LED lights. 

And this is the result.  I'm loving it!  

Our tree decorating and chopping has been a bit weird this year.  We always go the day after Thanksgiving.  But this year it was rainy and gross so we didn't go until Sunday. So we shopped Friday, decorated the house Saturday, and Sunday we were ready to get the tree.  

Most of us were ready.  This guy was just sleepy or sick or off or something.  He just was not feeling it.  

Here he's standing next to our fire pit.  My in-laws rent us a fire pit every year and we have a tailgating type party with food and drinks and good times. This year friends stopped by and we saw lots of people we know, it was so much fun! 

These kiddos have my whole big heart. Here we are on the tractor tram ride thing. Off to get our tree! 

After searching and searching an searching we found our tree!  It took lots of looking and walking and hunting and backtracking and grumbling but we found it!  And this was the best picture we found because Nick's parents were off looking for their tree, Emma wanted to be with them, so it was the three of us hunting for the perfect tree.  I've gotta tell you though, it was super weird and cray having a picture of just the three of us.  

This adorable guy has the biggest heart and decided that this year it was his year to cut down the tree!  He was so careful with the saw and was all business about it.  

He was trying so hard but it wasn't long before he asked for his Daddy to help.  These guys are so cute together!  

This is a picture of Cal getting to push the tree over.  He yelled "Timber!".  There are some days when I forget that he has Autism.  These days remind me that Autism is something like being left handed. It doesn't define him, it is just part of who he is.  We're not dragging it behind us like some type of cumbersome burden but rather it's just him, pushing a tree over and laughing.  

And just as easy as that we are ready to go!  

These cute guys are all throughout the forest and the kids love spotting them as we ride through on the tractor ride to the trees and then back to the firepit.  

And then it was time to eat and warm up by the fire!  By the way Cal here is eating a gluten free cupcake from the King Arthur Flour brand.  They are so super yummy and moist!  

There's my PSA, go buy this cake mix if you are gluten free.  Yum! 

After lots of snacking we came home and got to decorating!  Who doesn't love to decorate the tree? It was so much fun!  We got all of the decorations down before so the kids weren't sitting around waiting for us to find the decorations. 

So there was our Christmas tree experience this year!  

And our 25 day countdown to Christmas started yesterday!  Did y'all get started on a countdown or an advent calendar?  Let me know in the comments, I love all of your ideas!!!  

Learning to Celebrate Autism

My blog description says that I have a dab of Autism thrown in but lately I haven't been speaking the language of Autism lately.  

I think I've been hiding from Autism. 

Is that even possible? 

Not so much. 

Well I've been trying to.  I don't think it's been going very well but, oh well, I'm a gal who likes to try new things. 

For those of you who are new here, our son, Cal, is seven and was diagnosed with Autism when he was four-ish.  So we've been figuring it out for a little while.  We've been through a myriad of therapies and counseling and services and oils and supplements and anything and everything (it's felt like ) that we could get our hands on. 

When he was very first diagnosed we took him off gluten and anything else we thought that might help.

But nothing happened. 

So we resumed life and tried to figure out our life with our shiny new diagnosis.

Then this past year everyone kept saying "you really should take him off gluten", "you should really try gluten free" and I thought thanks you hippies but we've been there, done that and nothing happened.  It did seem to keep coming up though so we figured we'd give it a whirl maybe someday a long, long way down the road. 

But towards the end of the summer I was at my wit's end with the kid.  He was hitting and destructive and there seemed to be no end in sight.   He was like a human tornado. 

So one month I was out monthly shopping and I saw these great Bob's Red Mill mixes on sale.  And before I knew it I had sixteen gluten free mixes in my cart and I had sent a text message to Nick saying "we've gone gluten free. Deal." You can tell we're really in love,right?

And guess what?  The gluten free diet is working!  Working, I tell ya, working! I'm so thrilled to tell you all about that sometime but seeing as my vast knowledge basically spans me telling you it works and I'm happy...that's about it. 

I can tell you that is has helped him to be so much more vocal and to show us his emotions. When before he felt excluded by neighbor friends he would punch or kick or throw something.  Now he comes in with big crocodile tears to throw himself in my arms and talk incoherently about it until I can calm him down and work through what he could do in the situation. 

For those of you who are Mommas or more specifically, autism Mommas, I know you are smiling and nodding with me because as much as we never want our kiddos to be sad, you know that that is indeed a very, very good thing. 

Anyway, Monday we were at therapy; which even that I've been in denial about.  Cal goes to therapy but we don't really NEED to go, just finishing up probably...

That is until the occupational therapist gave me his evaluation of how he's doing. 

And reality gets to smack me in the face all over again with the clear message of "HELLO!  Your son has Autism!" I had clearly forgotten...almost. 

Sometimes you can run but you just can't hide. 

The fact is my son has autism and try as I would like to think he doesn't, he does.  Me burying my head in the sand doesn't seem to take that away.  Weird that doesn't work, right?

Sometimes it's really hard.  I am part of the strongest group of moms ever that I had always hoped I would never, ever would have to be a part of.  And yet I am learning after I get my head out of the sand to hold it high because, by golly, we are making it.  We are figuring this out.  

The broken windows. 

And the broken Nintendo 3DS. 

And the armrest that was bit through. 

All totally workable. 

And the evaluation that normally would have me locked in my house crying my eyes out?  Well I actually looked at the dern thing and believe it or not, we're at least making progress.  And that seems to be something to celebrate. 

Celebrate. What a word. 

Yes, I celebrate my son's autism. 

I celebrate that being gluten free is working, that he is talking and communicating more and we are able to help him in this small, super expensive way. 

I celebrate that I get to be his mom and he let's me snuggle.  Even if I have a three kiss rule to follow that he strictly enforces. 

And I will keep celebrating because there is so much to celebrate.  And there will continue to be.

Always.

My Autism Meltdown Today

I haven't spoken about Cal's autism for quite a while.  The reason being that things had been going so well.  Last year we decided to put Cal on Prozac.  We were very hesitant to but in the end we felt it was the best option for us.
It had amazing results.  So much so that when he was on the Prozac no one could really tell he had Autism.  He was just a normal little boy...able to talk and tell us things.  it has been nothing short of miraculous!

But lately the Prozac has stopped working.  And I don't know if it's because he's older or because things were so good for so long, but now he seems to be worse than ever before.

It is just so frustrating.  And daunting and horrid.

It is a really hard thing to explain unless you have been on this boat of Autism.  It is so unpredicatable.  Some times are good, others are horrid.  And yes I hate the horrid times but I think the thing that makes me so worn down, so tired and lonesome is the unknown of everything.  Will cutting his sandwich in half make him lose it?  Will he be able to handle not being in the same class as his sister?  

Everything is up in the air...all of the time.  And it gets hard and wears on me that this is my every day.  This is the life the Lord has trusted me to.  And try as I do to not complain there are times like today when I just have to lock myself in the bathroom, turn the water on so no one can hear, and just sob.  Sob at what I'm not quite sure...the phone calls I've had with the Developmental Pediatrician's office for the millionth time?  The books on my nightstand containing lofty information that might contain some glimmer of hope in a treatment we haven't tried?  The fact that he still can't tell me things I desperately want to know?

Somehow on certain days the cards I've stacked into a house all come tumbling down and the normal I have seems not normal enough.

It's just hard.  I realize I am rambling but the hard thing is having a hard life in the parenting department and not having anyone really know it or understand.  And there are no "sorry Autism is sucking the joy out of life" cards in the store.  At least none that I've been sent :)

One of the things that has made it harder is that Cal is getting older.  I'm watching him be rejected on playgrounds because of his behavior.  I'm having to sweet talk soccer coaches to get him on a team.  I'm having to do the walk of a desperate mom who just wants her little boy to be treated like a normal little boy. I wonder how much he notices.  How much hurts him.  Does any of it hurt him?  What is my place as his mother?  What does he hide behind those eyes that look like pools of Dr. Pepper?

This afternoon I googled devotions for autism moms and while I didn't find anything I came across this article about why Autism Moms Rock.  The thing that really hit home with me was discussed under #2.  It talks about how we never know who directly or indirectly will try to hurt us or our children. Here's the quote I understand:

  " Like a battle-worn soldier, we throw up our emotional walls to protect us from the hurt. We wear our armor never knowing what enemy could strike in a day."

This really struck a chord with me and helped me to explain things.  See when I have one easy thing to do in a day, say go to the supermarket, I stress over it and dread it.  It hangs over my head like an ominous cloud.  But this quote kind of helped me to solve it all...I think that it is because of the unknown regarding Cal's behavior.  And the unknown of people around me.  I do put my emotional walls up to make sure we are protected.  

So tonight as I have a sob fest for myself I guess I can just look at that as me having to prepare myself again for another day of battle.  Some days this gets so hard to fight but fight I will.  I have a 5 year old Prince that needs me to fight for him.  And no matter how tired and beaten down I get, I will still wake up in the morning, put on my armor, and head out to fight anyone who gets in our way. 

That is, unless I'm in the bathroom crying :)  

Part 3: Disney World! : Arriving at Magic Kingdom

Well being the meanest Mommy ever we settled into our room before hitting up the actual Disney part of Disney.  I had to get everything unpacked and ready to go.  I also had special little outfits that my friend who owns a business made for us.  I was able to send her a picture of a pair of matching outfits I spotted on Pinterest and she was able to recreate them.  And I loved them!  So we got ready to go and set out for the shuttle stop right outside of our hotel room.

And then the ominous clouds rolled in. * If you've never been to Florida just know, it rains almost every afternoon!  Be prepared!  Rain ponchos are a must!  I bought a ton of them from the Dollar Tree to take because who in the world would want to reuse a poncho??  I don't even know how you could?  It's all wet and you have to try to fold it back up?  For the birds!  Just consider buying them as one time use only!  They come two to the pack for a buck.  They were also useful for throwing all of our stuff in the stroller and then putting one over the stroller.

Anyway, the shuttle came and away we went.  I don't think I've ever been so excited in my life!  Is that pathetic of what????  I'm going with not pathetic, cool!  I kept squeezing Nick's hand in excitement!

As we were riding there big, thick drops started to wet the windows and by the time we got there a Monsoon had ensued.  Thunder, lightening, the works.  As the weather had warned us the week before, we were in for not the normal Florida showers here and there but rain all week, every day.  And not just rain, storms.  I have no beef with rain.  I do have beef with lightening as I'm holding an umbrella and pushing an aluminum stroller carrying my child.  That seems to logically pose a threat in my mind somehow.

So we waited at the station where the shuttle drops off.  And we waited, and we waited, and we waited.  Ugh.  Probably about 45 minutes later we decided it just wasn't going to stop.   So we made a run for it.  Magic Kingdom was right there and we were just holding it at an arm's length from our children.  Poor little dears.

So we went.  We ponchoed up, we ran.  We laughed.  In the end we made a memory and had fun.  And the mom part of me is still a little ticked that it rained.  Their little custom ordered outfits were a bust, Emma's shoes were ruined and everything was just blah and wet.  But I think that's just to me.  To the children they had a wonderful time and were in Disney!!!  And that is all that matters :)  I just need to remind my memory bank of that occasionally, lol =)

 Can you see the rain falling?  This is the first area you see in Disney...so cute!  I just kept squealing (in my mind, of course!) We're here!!!  We're finally here!!!  Eeek!

 Poncho clad kids...so cute!  See Cal's? We had to tie it behind him it was so big on him!  Getting mad that mom and dad are trying to wait out the storm...grrr.  It was comforting to know that all of the flags on buildings there are actually lightening rods in disguise!  They've thought of everything!

 I hate being wet.  Nick knew I was sucking at enjoying this time.  So he started taking my picture.  Going to kill him!  This is my I'm appeasing you at the same time I'm plotting your death smile.

Welcome to Disney!  It's raining!  But we finally made it!!!

Here's our little rain soaked little boy.  I dragged him into the City Hall and he was freezing! Isn't he adorable???  

As we've talked about before, Cal is Autistic.  This did make me a little worried because there are so many things that he has a really hard time dealing with.  Put all of those things together away from home with tiredness and hunger factored in and well, we could very well end up in a very bad situation.  

Cal's doctor was EXTREMELY helpful with this.  She gave us helpful situations.  She prescribed a fast acting anxiety medication for him.  And she wrote a doctor's note for Disney explaining his condition.  So here comes my tip...

*If you need special arrangements or accommodations made go to City Hall at Magic Kingdom first (you may be able to start at any of the parks but I had read that getting a special accommodation at, say Animal Kingdom would not necessarily be valid at any of the other parks.  But if you get it first from Magic Kingdom you are in like Flinn at all of the other parks...hope that makes sense).   You do not need a Doctor's note (they wouldn't even think of looking at mine) and the person you are getting accommodations for needs to be there (so little Jacky can't go ride teacups while you get it for him, just an fyi). 

Anywho, Disney was very understanding.  They gave us a special pass for our stroller that allowed us to use it somewhat as a wheelchair.  That if he was freaking out and we needed to keep him in the stroller, we could wheel it on in to rides and things when strollers usually are not allowed.  *TIP: if they offer something, take it!  I thought, he doesn't really use a stroller so we don't need that. But the lady encouraged me to take it "just in case" and I am so thankful because by the end of the trip he was pulling the shade over him in the stroller and refusing to come out he was so overwhelmed.  Eek.  

Also, they gave us a pass which could basically be used as a Fast Pass.  I will say that Calvin is not severely Autistic.  We are very blessed.  So when we got these things I felt almost silly, he was such a sweet boy just having fun.  But crowds and small spaces cause him to freak, so when he started stimming and yelling, we would pull out the card and be able to use it.  It was so nice to use when we had to and a comfort to know we had it if we should need it but we thankfully didn't need to use it the entire time.  By the end of the week though we were having to use it a lot more but again, it was so, so nice to have when we needed it.  It truly made our vacation magical in times it could have become absolutely horrific.  (Seriously sometime when Cal stims he chokes me and that's just not fun folks!) 

Sorry this is taking so long, but it's my blog and I want to write every dab nabit thing down!  Did I say that right?  This may take months :)

Here are this posts blogged in a nutshell:
* Know it rains...a lot (I think.  Everytime I've been to Florida it's rained in the afternoon)
*Buy rain ponchos at Dollar Tree.  I bought enough to have four per person.
*If you need special accommodations on rides and things just ask what can be done.  City Hall at Magic Kingdom is a great place to start.

I'll continue with my blog series next week...stay tuned!